Schizophrenia remains the forgotten mental illness. It is largely excluded from the national conversation about mental health. Often, the only time it gets attention it is for the wrong reasons – when somebody has a psychotic episode in public which ends in violence. These images are powerful and shape the public’s perception of what they think it means to have an enduring and serious mental illness.

But the picture is misleading. It is estimated that around a third of people with schizophrenia will have only one psychotic episode, after which they will recover. Another third may have repeated episodes but be perfectly able to manage their lives in between. It is only the remaining third who are resistant to treatment and so unwell that their lives are severely constrained. Overcoming the public image associated with a diagnosis of schizophrenia, however, is only one part of the battle.

The biggest challenge is accessing appropriate treatment at the right time. Charities that support people with a psychotic illness – which also includes bipolar disorder – say that the more mentally unwell you are, the more likely you are to have to wait longer for care. They blame the closure of acute mental health hospital beds without additional investment in additional community mental health services.

“A number of people are being managed in primary care but sometimes they are too ill to receive psychological treatment and not ill enough to be in hospital, which means they end up in crisis and find themselves in hospital in an acute psychiatric ward,” says Mark Winstanley, chief executive of the charity Rethink Mental Illness.

“They may go in as a voluntary patient, but in some trusts the only way you can get a bed is by being sectioned under the Mental Health Act. It means that people end up staying longer in hospital than they would have done if they received the treatment sooner [in the community].”

The frustrations and challenges faced by patients with serious and enduring mental illness are borne out by the results of two recent surveys. Rethink Mental Illness found that patients with serious mental illness had to wait, on average, 14 weeks for an assessment; and 51% said that when they did receive treatment, it was not for long enough. One in nine people with schizophrenia told the mental health charity Sane that they were given no support following their diagnosis, and 61% of family members also felt unsupported.

“Schizophrenia is still sitting on the backburner because there hasn’t been the breakthrough in treatment or a cure that we have all hoped for,” says Sane’s chief executive Marjorie Wallace.

“We don’t have a good news story to tell. It just doesn’t attract the kind of attention of other mental health conditions where people can talk about their successful recovery. All the focus and attention goes on the ‘softer’ end of the mental health spectrum.”

The government’s NHS long-term plan for England – which comes with a promise of ringfenced £2.3bn-a-year funding by 2023/24 – outlines a raft of reforms for mental health in the next 10 years. There is a big focus on the care of children and young adults, but there are signs that the needs of adults with serious mental illness are also being acknowledged.

Plans to introduce a mental health liaison team in every acute hospital are a significant step forward. Wallace hopes the teams will provide that vital link with mental health community services which, she says, has so far been missing.

A government promise of a one-hour referral to the liaison psychiatry team for people in mental health crisis turning up at A&E was also welcomed.

A commitment to build on models of care designed to provide a more holistic package for people with enduing serious mental illness, including housing and employment, was heralded as a step in the right direction. “In terms of crisis, we are optimistic that the work NHS England is doing, its involvement of the voluntary sector, and what does seem to be the commitment of additional resources, is good,” says Winstanley.

“But the current system doesn’t work – there needs to be a radical redesign in the way that people are supported.”

Experience: ‘What would really make a difference is for people to have a better understanding of this illness’

Rebecca Dignum is a qualified teacher assistant, volunteers in a charity shop, plays viola in her local orchestra and is a member of a community choir. She leads a busy life, not unlike most other 27-year-olds.

What sets Dignum apart from her peers is that she is living with a serious mental illness. She is testament, though, to what can be achieved if given the right support at the right time.

Six years ago, after she experienced auditory hallucinations and thought she was the “god of the universe” who could do “good things to good people”, Dignum was diagnosed with schizophrenia.

Two years later, following another psychotic episode, the diagnosis was changed to schizoaffective disorder – she experiences hallucinations and delusions typical of schizophrenia but also the manic mood swings of bipolar disorder. Since 2013, she has spent two periods in an acute psychiatric ward.

“The stereotypical image of schizophrenia is of the mad axeman,” says Dignum. “It scares you that you could be that mad, but that is your only experience of what it could mean to have that diagnosis,” she says. The reality for Dignum, though, is very different.

“I have ups and lows every week. When I am ill they increase to every day, to every hour, to every minute. I know what my triggers are, which is quite rare for most people with my condition – who might not recognise that – but it means that I can get help from my community mental health team before getting into crisis.”

She would, however, welcome additional support from occupational therapists (OTs): “I don’t get OT support because [they say I am not eligible as] I am living with my mum, but my mum isn’t my carer. An OT would help because I struggle with cooking and they could also help me look after myself physically as well as mentally.”

A therapist would work on building up her confidence when she is outside her home. “I sometimes struggle,” she says. “People sometimes give me funny looks when I’m trying to sort out money; my medication slows down my processes but people tut and think I look OK so why am I having difficulty?

“What would really make a real difference to me is for other people to have a better understanding of what it means to have this illness.”